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Posted 4/2/2010 11:06 PM (GMT 0)

This is my first post.  I've sought out this forum mostly because I'm lonely, I guess.  Sixteen months ago, I had everything going for me.  At 30, I had a job that I loved.  I had run my first half marathon.  I played indoor and outdoor soccer.  I had lots of friends.  I was strong, and confident.  Then with very little warning all of that was taken from me.  If I'm being completely honest, whatever wasn't taken from me, I gave up because I didn't know how to deal with my anger over this still undiagnosed illness I've been stricken with that has changed my life in almost every way.

I lost some of my vision.  I've vomited more times than anyone should in a lifetime.  My joints, mostly throughout the right side of my body hurt terribly at times, and at night I feel like I'm being burned at the stake.  Sometimes I have to pack my body with ice just so that I can rest.  Sometimes my asthma flares up.  Sometimes I get rashes.  I've had so many tests of so many kinds, and no one has been able to figure out what is wrong with me.  Two days ago, as a last ditch try to stop all of it, I started on a course of Prednisone. 

My job is secure.  It will be there when I am well enough to return to it.  My relationships were not so secure, mainly as a result of my own insecurities.  It's tough to be sick.  It's got to be tough to be friends with someone who is sick, especially when they're angry about it.  I feel so isolated, and so sorry about this person I've allowed myself to become in the face of this illness.

When I look in the mirror, I'm not sure who I am anymore, and it's not just that I've lost so much weight that I can fit into childrens clothes.  I don't think I know who is beneath the reflection.  I used to be happy, and optimistic, and driven.  I never turned down a dare, and I wasn't a quitter.  I'm no longer an athlete.  I'm no longer consistent, and someone I know can be counted on.

All this time that I've been suffering through this, I've wanted my life back.  I'm finally at a point where I'm willing to accept that I probably can't ever have the same life I used to have, but where does that leave me?  I still know who I want to be, but I need to know who I am right now.  How do I start a new life that I can be happy in regardless of the uncertainty I'm facing, and might always face?  What is my first step?

If you had asked me before I got sick what my goal was for my life, I would've told you that it was simply to be a good person.  To me, a good person is someone with intergrity, and compassion, who is kind to themself and to others.  A good person is grateful, and says they're are sorry when they are, and when they should be.  A good person does the right thing even when it's the most difficult thing to do. 

Whether I am sick or I recover from this somehow, that goal that has always been most important to me doesn't have to change.  I lost sight of it for a while, but I can see it now.  I might not be able to do everything I used to do, but I'm sure I can be a good person again.  I am not a quitter.

Posted 4/2/2010 11:26 PM (GMT 0)
Welcome Butterfly ~
I am so sorry you have been so sick. It is miserable indeed. I am sure the not knowing makes it twice as bad. I think you will find some wonderful, understanding, caring individuals in this forum. I know when I have a bad day, I can pop online and instantly feel better. Crazy, since I technically do not know any of them.......yet, feel like I do. I hope it does the same for you. :) Please know you are in my prayers and I am happy to talk anytime you need to. Hope you are having a tolerable pain day.
Hugs my friend ~
(((((((((((((((Butterfly4))))))))))))))))))))))
Posted 4/2/2010 11:38 PM (GMT 0)
Thank you very much for you kind words. If your reply is any indication, I believe I will find some friends here. Your offer to talk anytime, and your prayers are most appreciated.
Hugs back.
((((((((((IsThereAnEnd?))))))))))
Posted 4/2/2010 11:39 PM (GMT 0)
Butterfly4...

Welcome. I'm sorry are dealing with so much, I really am. But, however you found your way here...I'm glad you did. I think you'll find many people that will understand your post more than you would think. Most of us here "get it"... Many of us here have had our lives ripped out from under us, too.

I was 30, too, when I got so sick w/ health issues and chronic pain. I was a busy mom of 5 young boys and one on the way. I ran a private school...taught classes... volunteered my time at a zillion different things... ran my kids all over the place.... etc. I had everything going for me, too. So, I understand what a loss it is... how sad it is.... how much you need to grieve because you are a different person now. I get it.

I think it is really tough on relationships, family, friends w/ a chronic illness. The first year or two of being sick - I had a ton of people that were there for me. As time went on, though... and I didn't get better... things changed. Life went on... I wasn't the same person... and, now that I look at it, some of those relationships weren't what I thought they were, either.

You asked... "where does this leave me?".... I can only share my experience... My health left me rebuilding a new life, almost from scratch. I had to come to terms that the things I have probably aren't going away... and I had to change my thinking on everything. I used to be a neurotically organized "planner"..... Now, I don't know from one day to the next.....how I will feel, if I'll be able to get out of bed, etc. So, I've had to change, in order to just be able to deal with this "new" life. I don't look towards next year...next month...sometimes, not even next week. I have to live just in the moment. Trust me, it's not an easy adjustment..... but I believe you can get there. I really do.

I know it's hard not knowing what's to come... I really, really do. I know it's hard saying goodbye to the person you were... but you sound like you are a wonderful person...even with all that you are facing.

I also know what it feels like to have an "undiagnosed" thing. It took about 5 years for me to get to a point where I had a diagnoses that I felt good about. For a stretch of time...they thought I had everything from cancer, to MS, to lupus, etc. It's a tough journey getting to a diagnosis.... But, if I can just encourage you, don't give up on trying to get one. Search out other doctors or whatever you need to do. There's just "something" about knowing what you are dealing with than dealing with the "unknown".

I know there will be others that will come along...that will probably say things much better than I just did... but, above all, I just want to encourage you to keep posting here.... venting when you need to.... I think you'll find how caring people are here... and how wonderfully supportive everyone is.

Take care... and I hope to get to know you more.
--Tina
Posted 4/3/2010 12:00 AM (GMT 0)
Thank you, Tina.

I think you said it all very well. In fact, you just made me cry. The whole time I've been dealing with this, I haven't had anyone in my life who had or has been experiencing any of what I have. I know that has contributed to the loneliness. Most of the people I had in my life did not profess to know how I felt, but after a while, I know no one wanted to hear about it. Everyone just wanted me to get on with it. I really did need time to grieve for the life I used to have. I might not always have grieved in the best ways, but I did the best I could at the time. Now I think I'm ready to do better.

Thank you for taking the time to share your encouragement and your own story with me. I hope to get to know you more also.
Posted 4/3/2010 12:33 AM (GMT 0)
Well Hello Little Butterfly4, and Welcome to the CP forum. You may as well unpack your suitcase and settle down here, as I think this will be your new home for a while! :) Yes!...we all understand your plight, or at least we will try to.

Here you will find the most caring members in the world, however it is up to you to become involved, such as you have done today, by reaching out for help. Keep check on your post for replies, and be patient with the members here.

One thing, I like to see new members do is to please read the forum rules and to read the Chronic Pain 101 that our Moderator Chutz has posted at the top of the forum page. There is some very good information there.

I hope you enjoy your stay with us, and don't be shy about asking questions. We are here to help as best we can, and provide you friend ship that is very unique.

SE
Posted 4/3/2010 12:46 AM (GMT 0)
Thank you for the welcome Screaming Eagle. I have a feeling that this will be a soft place for me to fall, and an equally great place for me to celebrate each time I dust myself off, and get back up again. I look forward to receiving encouragement from others with similar experiences, and to giving encouragment to those who need it whenever I can.

Butterfly4
Posted 4/3/2010 1:13 AM (GMT 0)
Ahh! Butterfly4, I can tell that you are going to be a nice fit with our forum here. What a great attitude, already looking to help others here. Wonderful!

SE
Posted 4/3/2010 10:03 AM (GMT 0)
Hello Butterfly,

I'm glad to have you here with us. I too have felt the sting of frindships lost and being "left behind". Most of us have because we are "different" now. At first, this board my feel addictive to you and you may be drawn in to every post. You may feel you have to get back to the "real" world for a while and we understand if you need to take a break to settle your life down. We almost all do.

I am so sorry that you have to experience what you do. I'm about 12 years older than you, but I feel 80 sometimes. Believe it or not, my waking thought (and reason for coming to the board this AM) was relationships. I guess we are all in the same boat in a way.

Please don't give up! There is help out there for you, but you may have to do the digging yourself. Often times we have to research on our own and then hunt doctors who are willing to test for whatever might come close to the problem. We may be wrong, but there are really good, caring dr's out there who will take your lead and find the real problem. It took many, many years to find mine and most of the damage has already been done to my body. But, my mind is on it's way back, so I feel blessed now.

We are here to help and to give support. Please use this forum as a tool to help you when you need us!
Posted 4/3/2010 1:56 PM (GMT 0)
Welcome Butterfly.
Posted 4/3/2010 8:13 PM (GMT 0)
Hi Butterfly,

Welcome to the lifeline here, more commonly known as the HealingWell Forums. This is definitely the place to be when you're suffering from chronic pain and need to vent and share with others who really "get it"...because they are also experiencing it.

I am so sorry you are struggling with not only pain, but without an official diagnosis of what the cause(s) could be. I think it's easier to deal with something when you have a name for it. I fervently hope that your doctor(s) are able to reach that diagnosis, so you can be started on the best course of action for feeling better. I don't believe you mentioned if you are receiving any treatment at the moment...are you under a doctor's care currently and are you taking anything for your pain? Sometimes, just being on the right medications, or doing the right physio or exercise can make a huge difference in how you feel.

I might suggest you consider seeing a counsellor who deals with chronic pain as well, who can help you deal with the emotional issues that can be experienced. I have a pain psychologist as part of my care team at the chronic pain centre I go to, and she's been a great help. These forums have been wonderful as well, because everyone here is dealing with the same issues you're going thru.

It's hard to be dealing with a chronic health issue, especially if you've been a picture of health beforehand. Your entire identity changes and sometimes, you become something you don't recognize. I think its important to know that the "you" of before is still there...and as you unwrap the layers of this new reality, you'll find that good, courageous, happy and optimistic person you saw previously. I think for me, it's a case of not letting my health issues dictate "who" I am...I may have to live with Fibromyalgia and chronic pelvic pain and IBS and every other darn thing in my signature below...but that's not who I "am".

Despite being in constant pain and living with numerous restrictions on my daily activities, etc, that weren't there in the past, I'm still a cheerful, positive, engaging, funny and considerate gal, who loves to laugh and have fun. It might not always be as easy to be those things, but it's still who I am fundamentally. I just went on long term disability from my job - my career has been a huge part of my identity for many years. I'm unable to work now, but I'm still me.

I hope you find a place here with us and are able to use this forum as a place to learn and help and share and heal. There is a terrific amount of caring here - we're a family and the door is always open to join us.

Welcome....I'm sorry it's pain that brought you here, but I"m glad you've joined us

hugs,
Pam
Posted 4/3/2010 8:32 PM (GMT 0)
Thank you, Pam.

I am currently under the care of my family physician, an internist, and a rheumatologist. Though I am without a diagnosis, I have just started a month-long course of Prednisone. It's day 4 now. The side effects aren't pleasant, but I'm coping with them in the hope that the medication will improve my symptoms. I was taking Toradol for a while, which seemed to help quite a bit for the inflammation I was experiencing in various areas of my body. When I am in a lot of pain, I have taken T3s, T4s, and Percocet. I have been able to significantly reduce my intake of these narcotics, which has allowed me to be more functional.

I am seeing a psychologist at present. She does not specialize in chronic pain conditions, but she has been effective in providing support thus far. I believe it will take some more time for me to formulate the right treatment team, who are most equipped to treat my conditions, but I've managed to weed out the ones who haven't been supportive. I'm finally grasping that adapting to this new life is a process that I have to work with and not fight against. You are right, that I am still the person I was. I just have to remind myself of that. I don't want this illness to define me.

I will be starting some physio therapy in the coming weeks, as well as some massage therapy. I'm keeping my fingers crossed that if I work with the supports and treatments that I have in place that I might be able to return to my job. It's something that is really important to me.

Thank you for your support.
Posted 4/3/2010 8:54 PM (GMT 0)
Hey Butterfly...

I'm been thinking of you... your post really touched me. I guess it's because I've walked in similar shoes... Thanks for giving us more information re: your situation.

I know how nasty prednisone can be (the side effects)... but I still hope it helps you just feel better.

Take care... and I'll talk to you soon.

--Tina
Posted 4/3/2010 9:23 PM (GMT 0)
I don't want to try to take the place of an actual doctor, but....

Did this by any chance start with some kind of infection, or something that could have been an infection? Some kind of immune system shock? Digestive, reproductive (STD or non-STD), skin, etc?

A lot of what you describe -- particularly the arthritis-like pain which is dominant on one side of the body over the other -- sounds like Reactive Arthritis AKA Reiter Syndrome. It took me years to be diagnosed with it, and it's not very well understood by the medical community (even rheumatologists), despite being fairly common. Much more so than most medical professionals seem to realize.

In any case, I hope you find what you need one way or another. You may want to look into ReA as a possible cause. A lot of cases where people are diagnosed with other conditions, such as Fibro, are actually ReA. It's just not very widely recognized by doctors.

Another classic sign (common but not necessarily present in all cases), is sacroiliitis.
Posted 4/3/2010 10:12 PM (GMT 0)
Thank you for your reply, exitwound.

When all of this first began, its seemed to be triggered by stress, the death of a family member. The major stressor occurred, but the illness itself didn't appear until a couple of months later, so I'm not totally sure if the two are actually related.

The joint pain, vomiting, fevers, GI distress, etc, all occurred after a terrible cold/flu I came down with last spring. Since that happened, I have never recovered, and my condition continually worsened. I haven't heard of Reiter Syndrome, so I will definitely look into it. Thank you for the information.
Posted 4/4/2010 4:46 AM (GMT 0)
Butterfly4

I to, would like to Welcome you to our forum! I think you will find that you have come to place where you are part of a very warm and caring family! You might not find any answers to your problems here, but you will find that you are not alone, and that we all do care about you, and each other! We are all here, ready and willing to listen and share in your burden! There are allot of us, that have a diagnoses and are being treated for our problems, but yet there are still a few of us, that are like you, in that, we still have some problems, or ailments that have yet to be diagnosed! So like you, we just have to take it day by day, and cope the best we can! Hang in there Butterfly4, as I mentioned you are not alone! I do wish you all the best!

White Beard
Posted 4/4/2010 3:13 PM (GMT 0)
Thank you for the warm welcome, and your kind words, White Beard. They are greatly appreciated.

After just a couple of days of being here, I already feel less alone in the world.

Have a great day :)
Posted 4/4/2010 4:46 PM (GMT 0)
Butterfly4,
I have read your post and have been meaning to welcome you several time, but I think it hit your words hit so close to home that it's difficult for me to find the words.

I want to truly welcome you, tell you that you are definitely not alone, and even though I'm decades older than you, the issues we struggle with on this forum are often the same.

I'm glad you found us! I wish you a peaceful holiday.

PaLady
Posted 4/4/2010 6:26 PM (GMT 0)
Thank you, PALady. I appreciate the welcome and your support.

Happy holiday to you as well.

Butterfly4
Posted 4/4/2010 10:38 PM (GMT 0)
Hi and welcome
i too have a lump when replying to your post a year ago i was already dealing with crohns pg n fibro and then i lost my hubby he left.... both my parents within 2 yrs and my hearing
i woke up on life support at local hospital surrounded by family
they were all there helping during my time in hospital but brunt of my care fell to my 16 yr old who had found me in a seizure when she was done work
Since then i have really been a shell of self scared not being able to talk to ppl on phone different issues
i too dont weigh more than 100 lbs even with eating
the neuropathy in legs causes issues for me to walk n i truly loved to be out walking in all weather prior to this
it is truly amazing just what the body does in reaction to trauma imho as well as the mind
i am starting to recall more and able to do more but it really took alot to get here
i have to say a huge ty to my loving daughter who has selfishly at age 16 put her life on hold to help mom and her bf as well as my healing well family
as you can see i hv been a member for some time and the care concern love n support i have gotten from here n cait has brought me back more each day
stay with us keep posting
know ppl really do care n get it
hw is not a fly by night group
we are truly a family here
welcome i am sorry you have to be here but we can help you thru
huggles
lyn
Posted 4/5/2010 12:15 AM (GMT 0)
hi butterfly,

wow your illness SCREAMS Lyme disease to me. But I Am no doctor. Starting with a flulike illness and stress? All the symptoms you list I also have, and have Lyme disease. I bet you likely have been tested. have they tried antibiotics on you yet? I would see if you could try 1 month of doxycyline if you havent already. I also went on pred and it helped my pain immensely. DOxy may make you feel worse (or any antibiotic) if you have Lyme.

There is a lab in california that specializes in tick borne illness testing. It is called Igenex. Alot of times, people test negative on regular tests at regular labs, but test positive there. maybe you can talk your rheumy into ordering you the lab tests?

I try not to get on my "you have t o be tested for Lyme" soapbox too often, but boy, I had to say something here.

check out the lyme forum here or go to lymenet.org
Posted 4/5/2010 12:32 AM (GMT 0)
Thanks, merrygirl.

I have actually been tested for Lyme disease twice now, and both times the test came back negative. I recently watched an investigative journalism piece on the prevalence of Lyme disease in Canada, and how it is rarely tested for, and when it is, often returns false negatives. I've wondered also if this might be the case with my own illness.

I have not been on any antibiotics for my symptoms to date. The Prednisone does seem to be helping so far. I am optimistic. I will keep this particular diagnosis in mind as it does seem like a possibility to me.
Posted 4/5/2010 12:37 AM (GMT 0)
Thank you so much for your reply, and for your support, Howlyncat.

I feel like a part of the family already. Although the circumstances that have shaped this family are unfortunate, I know there is strength in numbers, and in shared experiences. The kindness I have received already has been overwhelming, and has given me a renewed faith to keep moving forward.
Posted 4/5/2010 12:48 AM (GMT 0)
I have found so many times when i had just about given up that i could come here and in one forum or another there would be someone going thru what i was or they really connected
i have to say this place these ppl have renewed my faith in human race over the years i have seen so many ill hurting and they come here and find real ppl that have or do know how they feel
Never are you alone once you have made friends here
like i said
keep posting
support others as well and know
WE do understand and care
have a better night
blessings

lyn
Posted 4/5/2010 1:18 AM (GMT 0)
Hi Butterfly,
I feel so many emotions after reading this post that I...I don't know. I am just so sorry you have been through what you have and are continuing to go through. My illnesses began abruptly and I too felt I'd lost everything! I haven't known how to deal with all the doctors, all the pain and all the sorrow. This has been going on for me for 5 years this July. I was not a stranger to pain though as I developed debilitating migraines when I was 12 years old; I am now 51. I am unable to take Imitrex or any of the related medicaitons so, I've spent many days, evenings, nights at an ER at my doctors direction waiting for pain med shots to help me get over the migraines. I then developed many other illnesses and I still go through really ridiculous things with my pain manangement doctors and such. Yesterday I was going through such a deep depression and during a moment of meditation it became very clear to me that even though the major illness may very well kill me, today I am alive! All these years and I'm just figuring that out! I'm not ignorant either! I believe it was depression and greiving the loss of the life as I knew it much like you said. Today, I have lived. Seriously, today I have lived my life with eyes wide open. I made the choice to live this day and I made the choice to live everyday to the best of my ability. If it's not good enough for someone else, I do not need that person in my life. My family of origin really got tired of me being sick and didn't want to deal with it so, I had to create a new family of my own. I'm very strict with it as I have to have people who are loyal and dedicated to me as I am to them. I have a wonderful husband and some great kids, but I also have people in my life who are not blood related, yet who are certainly my family.
So, welcome here, welcome to life and welcome to people who accept you as you are, not as you were.
Sincerely,
Catz4
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